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Re: Post Lyme Syndrome

Re: Post Lyme Syndrome

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Posted by laura masterson on July 13, 2000 at 21:11:37:

In Reply to: Re: Post Lyme Syndrome posted by Lynn Shepler, MD, JD on February 06, 2000 at 14:55:09:

:
: : This is my first time to visit this message board. Three years ago I was diagnosed with Lyme disease & received 13 months of continuous treatment with antibiotics. During the last two years I have had periods of nausea, always preceded by vibrating sensations in my head. There is no pain and no sound ,but vibrations seem like small electrical shocks. They are followed by nausea, fatigue & sometimes by vomiting. Aches in my elbows come & go.

: : A thorough physical exam & a MRIshow no other health problems. Could these symptoms be accounted for by post lyme syndrome? During the height of my disease nausea & fatigue were my major complaints.

: : Any information or research resources anyone has would be most appreciated. My doctor was progressive in diagnosing and treating my disease ( western blot was difinitive) but seems unwilling to believe these remaining symptoms are related to the lyme after 13 months on antibiotics.

: : Thank you for your assistance.

: : Kathy

: Dear Kathy,

: "Post-Lyme syndrome" is a bunch of bunk. There is no scientific evidence for the existence of this so-called syndrome. The obvious explanation, born out by reports in the medical literature, is that persistent symptoms of Lyme disease following antibiotic treatment is due to persistent infection with Borrelia burgdorferi. Unfortunately, the topic has been politicized and obsfuscated by the powers that be who hold conflicting professional and commercial interests related to ourscientific understanding of this disease.

: Your symptoms are consistent with persistent infection. MRI scans (I assume this was of the brain) are generally of low yield in chronic or late stage Lyme disease. Brain SPECT scans can be helpful in nailing down the diagnosis. I also believe that evidence for a Jarsich-Herxheimer's reaction after the re-introduction of antibiotics is also persuasive evidence of persistent infection.

: When there are questions of persistent infection, it can be worthwhile having a Lyme urine antigen test done through IGENEX (1-800-832-3200), particularly in conjunction with an antibiotic challenge test. Antibiotics can increase the yield on these tests.

: In any case, symptoms like what you are describing should not be ignored. There is a group of patients who relapse off antibiotics and who require repeated courses of antibiotics, despite whatever seemingly extensive treatment they have already undergone. This appears to be related to the organisms ability to convert into dormant cystic stages which seem to be able to "hide" from antibiotics.

: Good luck!

Dear Kathy,

I, too, have neurological damage from lyme. I have been on antibiotics for 12 mos. I experience those same head pains and many other symptoms that just haven't seemed to subside. Cold, numb, tingling sensations in my hands still occur. Chest pains pop up every now and then, night sweats, eye pain, etc. The worst is the head pain. Shooting, electrifying pains without warning. It is most certainly from the lyme. I agree with the doctor that also responded to you. You need continued treatment and a new doctor if yours thinks you are all set. You are NOT! And there are dr.'s out there that will help and that understand. Don't let this horrible disease get you down.




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